Uno Chicago Grill to Support the ACDA

From May 25 through May 31, 20% of Uno Chicago Grill purchases made with this voucher will benefit the American Celiac Disease Alliance (ACDA), which advocates in Washington, DC.

If you want to be part of this fundraising effort, contact your destination Uno Chicago Grill to confirm that it is a participating restaurant. And don't forget that voucher!

Here's a gluten-free pizza coupon— and here are the gluten-free offerings at Uno Chicago Grill.

And here's a CNBC item about Uno Chicago Grill's gluten-free pizza. What do you think about the pizza? Is it delicious, or is it cardboard??



Source (1:21)

CeliActivism: Health Care Reform

The Obama transition team welcomes input

During the second half of this month, Tom Daschle and the Obama transition team will welcome public input on its health care policy. Much of the attention at the forthcoming health care community discussions will probably be on how more people (especially children) can receive affordable health insurance, but this might be an ideal time to become more aggressive about finding ways to heighten awareness of celiac disease.

As you might recall, Barack Obama supports preventative medicine and judicious government spending. I would imagine that he is also looking to create "success stories" during the initial phase of his presidency.

I think that a celiac disease awareness policy would achieve those goals because

* More than 2,000,000 Americans of all ages (about one percent of the population) are estimated to have celiac disease that is undiagnosed or misdiagnosed even though they may be experiencing symptoms.

* Diagnosing and treating celiac disease in the undiagnosed children can help them develop normally, avoiding illnesses such as osteoporosis.

* Diagnosing and treating celiac disease in the undiagnosed general population can also prove beneficial, fending off osteoporosis as well as chronic fatigue, thyroid disease, and some forms of cancer, along with many other health issues.

* Decreasing the "time to diagnosis" from its current length of about 10 years can eliminate unnecessary tests and medical visits.

* Celiac disease can be initially screened through simple and relatively inexpensive blood tests.

* Celiac disease is treatable by diet, not medication or operations or procedures.

* The Obama administration does not need to initiate an awareness program from scratch. It can shape a policy that is informed by the examples of other countries, especially those in Europe.

* By raising awareness at a point in time when the vast majority of people with celiac disease are unidentified, the Obama administration can measurably accelerate the rate of diagnosis—in other words, it can point to results.

I hope that this type of message makes its way to people who can see the reasoning in it and take action to make it happen. If you agree, please think of how you can help to get the message across, whether it's through a community health care discussion, contact with sympathetic political figures such as Kemp Hannon, Nita Lowey, and Hillary Clinton, or contact with an advocacy group such as the American Celiac Disease Alliance (ACDA) and National Foundation for Celiac Awareness (NFCA).

Thanksgiving

The American Celiac Disease Alliance (ACDA) recently sent this letter to The Chicago Tribune in response to the paper's articles on poor food labeling practices.

Dear Chicago Tribune Editor:

On behalf of the American Celiac Disease Alliance (ACDA) and the thousands of Americans now affected by Celiac Disease, thank you for publishing the two-part investigative series on food labeling and food manufacturing oversight entitled Allergy Threat: A Tribune Investigation" (Nov. 21 and Nov 23, 2008).

Mr. Roe's thorough and well researched article exposes the serious and sometimes life-threatening problems that can be caused by mislabeled food products. His article paints a compelling and very personal portrait of the challenges people with Celiac Disease, food allergies and other health concerns face each and every time they shop the grocery store aisles.

Celiac Disease is the world=92s most common autoimmune disease. Although most have yet to be diagnosed, it is estimated that at least 1% of the U.S. population has this inherited disease. Today, the only known treatment is strict adherence to a gluten-free diet for life.

On behalf of those living with Celiac Disease, the ACDA applauds the Chicago Tribune's efforts to raise awareness of the issue and to demand stricter oversight of food labeling and enforcement by the U.S. Food and Drug Administration (FDA). The Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA) was an important first step in protecting celiac, gluten intolerant and food-allergic consumers. Mr. Roe's article clearly indicates that more stringent oversight is necessary. We agree.

In January 2007, the FDA proposed a standard for "gluten-free" labeling. Under its proposal the maximum threshold level for gluten would be set at 20 parts per million (ppm). When finalized these regulations will help to ensure that individuals with Celiac Disease are not misled by incorrect food labels and that they have truthful, accurate and easily accessible information on processed food labels.

Until this regulation goes into effect and FDA oversight is strengthened, food-sensitive consumers will be left wondering what products they and their families can safely consume. In the case of those with celiac disease, they will also be questioning the safety of adhering to the gluten-free diet, their only medical treatment.

Andrea Levario, Executive Director
American Celiac Disease Alliance (ACDA)

Photo: David Marc Fischer

SCHOOL LUNCH SURVEY

Want homework? A recently opened survey from the American Celiac Disease Alliance (ACDA) asks who provides gluten-free lunches for students through college.

A major goal of the American Celiac Disease Alliance (ACDA) is to improve the availability and access to gluten-free meals in schools for students with celiac disease. Recently, the ACDA was approached to work on a collaborative project which will help move us closer to achieving that goal. One of the first steps of the project is to determine the level of interest for gluten-free school lunches.

The ACDA has launched a brief online survey to find out who is providing lunch for student's with celiac disease - parents, school, or a combination.

If you have a child with celiac disease attending school, please click below to complete the survey.

Your input is vitally important to demonstrate that our children want and need gluten-free meals at school. The survey will close on July 2, 2008.

Thank you for helping us help our kids!

You can fill out the nine questions here.

GLUTEN-FREE CALENDAR CONUNDRUM!

I recently read some emails on the international celiac listserv that helped me to understand why there seem to be at least two celiac disease awareness months.

Let's start with a message from Beth Hillson, president of the American Celiac Disease Alliance (ACDA), about May being Celiac Disease Awareness Month:

In response to the question about May as Celiac Awareness month -- the overwhelming majority of celiac organizations and all of the Celiac Research Centers in the United States recognize May as National Celiac Disease Awareness Month.

Internationally, the Association of European Coeliac Societies (AECS) recognizes Celiac Disease in May and celiac events are held throughout the world to raise awareness.
(The association represents 26 countries of the EU - including Andorra, Austria, Belgium, Croatia, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Portugal, Romania, Russia, Slovakia, Slovenia, Spain, Sweden, Switzerland, and UK)

The May observance in the United States was chosen to coincide with our international colleagues. It was also done in recognition of the many other medical conditions related to celiac disease that are observed in May. Celiac disease is still relatively unknown and being able to draw connections between these medical conditions and celiac disease helps to elevate its importance and enhance awareness. Some of the other May health observances include:

Digestive Diseases Awareness Month
Digestive Diseases Week
Food Allergy Awareness Month
Food Allergy Week
National Arthritis Month
National Osteoporosis Awareness and Prevention Month
Women's Health Week and Women's Health Check-up day

Organizations, Research Centers, and Companies supporting the May observance:

Celiac Disease Foundation
Gluten Intolerance Group
Westchester Celiac Sprue Support Group
American Celiac Disease Alliance
National Foundation for Celiac Awareness
University of Maryland Center for Celiac Research
University of Chicago Celiac Disease Program
Celiac Disease Center at Columbia University
Wm. K. Warren Celiac Disease Research Center UC San Diego
Bob & Ruth's Gluten-Free Dining & Travel Club
Ener-G Foods, Inc.
Enjoy Life BrandsT
Foods by George
Gluten-Free Living
GlutenFree PassportR
Glutino-USA
Kimball Genetics
Living Without
Pamela's Products
Prometheus Laboratories, Inc.
Savory Palate, Inc.

Its worth noting that October is Breast Cancer Awareness Month. It is extremely difficult for any condition, to compete for attention at that time. And since recognition and attention are key to raising awareness, May is a better fit.

Congresswoman Nita Lowey (NY) introduced legislation in 2004, 2006, and again, this year (H.Con.Res. 70) which emphasizes the designation of May as National Celiac Disease Awareness Month. That legislation now has 29 cosponsors and more are expected once Congress returns later this month.

I hope this helps clarify why May is supported and endorsed as National Celiac Disease Awareness Month.

Before considering why others consider October to be Celiac Disease Awareness Month, let's pause to recognize Celiac Disease Awareness Day—September 13, the birthday of Samuel Gee, who is widely considered to be the "discoverer" of celiac disease.

As for October being Celiac Disease Awareness Month, that is basically the province of the Celiac Sprue Association (CSA) and the Canadian Celiac Association (CCA)—which is, nevertheless, having its national conference in May!

Of course, here at GFNYC, every day is Celiac Disease Awareness Day—and every month is Celiac Disease Awareness Month!

MEETING: WESTCHESTER SUPPORT GROUP

I'm not just an admirer of the Westchester Celiac Sprue Support Group (WCSSG)—I'm a member of the group, too.

WCSSG kicks off its 2007-2008 season from 2-4 pm on Sunday, September 16, 2007 with guest speaker Beth Hillson, founder of glutenfree.com and President of the American Celiac Disease Alliance.

Try to get there on the early side, because the vendors include Joan's GF Great Bakes as well as Enjoy Life Foods, Maxwell's Kitchen, and WCSSG member Annalise Roberts with her cookbook Gluten-Free Baking Classics.

The meeting takes place at Phelps Memorial Hospital Center at 701 North Broadway at the intersection of Routes 9 and 117 in Sleepy Hollow, New York. You can get there by taxi from the Metro-North station in Tarrytown, but if you're reasonably fit you can also walk there (give yourself at least 45 minutes and check a map in advance) from the Philipse Manor Station.

In other news, the WCSSG-sponsored GFRAP restaurant Frascati now offers gluten-free pizza with crusts from Still Riding Pizza. There's a change in ownership at Frascati, but it looks like the restaurant will remain in GFRAP.

And, judging from the WCSSG member newsletter, it seems that one or two area restaurants will soon join the roster of GFRAP, which still welcomes volunteers. For volunteer information, contact area coordinator Liz Lebo.

CELIACTION: CELIAC AWARENESS MONTH...PLUS FUNDING!

Quick: Which month is Celiac Awareness Month?

Beth Hillson--president of the American Celiac Disease Alliance (ACDA) and founder of The Gluten-Free Pantry--just issued the following call to action:

On February 16, 2007, Representative Nita Lowey introduced H.Con.Res. 70, which endorses May as Celiac Awareness Month, and calls for increased federal funding for celiac research.

Rep. Lowey was one of the lead sponsors of the Food Allergen Labeling and Consumer Protection Act (FALCPA) which requires food manufacturers to list the top 8 allergens on their product labels. The law also required the FDA to set rules for using the term 'gluten-free' when labeling products.

The American Celiac Disease Alliance applauds Rep. Lowey for her continued efforts to raise awareness about celiac disease, and for her support of our community.

Ask your representative to cosponsor H.Con.Res. 70. Email them directly by going to the ACDA online advocacy site www.capwiz.com/celiac and entering your zip code under "Elected Officials." Your voice will make a difference.

Thank you!

Beth Hillson
President, American Celiac Disease Alliance